Pediatric HIV/AIDS in the United States

Almost all new pediatric AIDS cases in the United States result from perinatal transmission of HIV. Although new HIV infections among infants have dropped dramatically since the introduction of AZT-based regimens in 1995, perinatal transmission continues to occur, often because HIV-positive pregnant women do not receive appropriate care. Transmission most commonly occurs during gestation (in utero), during labor and delivery (intrapartum), and during breastfeeding.

Surveillance

In 2003, 59 AIDS cases were reported among children under age 13, a decrease of 68.4 percent since 1999.1 In the 25 States with confidential name-based HIV reporting, the reported number of perinatally infected infants dropped by 74 percent from 1994 to 2003.2

From the beginning of the epidemic through the end of 2003, 9,419 children have been diagnosed with AIDS. Of those cases, 92.9 percent resulted from perinatal transmission.1 In 2003, a total of 3,927 children were living with AIDS, of whom 62.6 percent were Black, 21.7 percent were Hispanic, 14.5 percent were White, and less than 1 percent were Asian Pacific/Islander or American Indian/Alaska Native.3

Critical Issues

Children with HIV face an array of issues, including stigma. Unlike adults, children often have no choice about disclosing their HIV status to others. As a result, children often must grapple with adult issues involving living with a chronic illness that is not generally accepted in society.4

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HIV-positive individuals in care are poorer than the general population; poverty is associated with lack of health information, the presence of comorbid conditions, and poor access to care. Today, most children with HIV are born to mothers who receive inadequate prenatal care: "With proper maternal treatment and perinatal prophylaxis, the risk of passing HIV from mother to child is less than 1 percent, compared with 28 percent without treatment."5 Access to care for pregnant women is therefore critical for reducing HIV infections in infants.

People infected with HIV during childhood are living longer than ever. Many have grown into adolescence and face the normal challenges of teenagers. Children and adolescents are at greater risk for incidence and severity of psychosocial complications related to HIV infection, such as mental illness, and are likely to experience body image concerns resulting from delayed development, chronic dermatologic conditions, or lipodystrophy.6

Adherence, a problem for all HIV-positive individuals, poses a particular obstacle for children, who must cope with dosing requirements and side effects that have proven difficult for even adults to manage.

Pediatric AIDS and the Ryan White CARE Act

Care for HIV-positive infants and children is most successful when provided in the context of care for the entire family. Unless caregivers, most of whom are also HIV positive, receive the services they need, their ability to care for children will be compromised. Services that respond to the myriad problems commonly seen in families with an HIV-positive family member -- including comorbidity, poverty, lack of transportation, and poor housing -- are essential.

All Ryan White Comprehensive AIDS Resources Emergency (CARE) Act programs serve children and their families, and the Title IV programs specifically focus on the needs of this population. Services include perinatal and pediatric specialty care, support services, and linkages to research and clinical trials. The Title IV program also has created special activities, such as the African American Children's Initiative, which have focused on reduction of perinatal HIV transmission and increased access to quality care for black children.

The National Pediatric and Family HIV Resource Center, a project of the University of Medicine and Dentistry of New Jersey, supplies health care providers with information on diagnosis and treatment of HIV in pregnant women, infants, children, and youth and promotes the adoption of innovative approaches to providing comprehensive health and social services to clients. Many of the center's activities are supported through a cooperative agreement with the Health Resources and Services Administration's (HRSA's) HIV/AIDS Bureau.

From Isolation to Transformation: A CARE Act Guide to Supporting Men Caring for Children Living With HIV/AIDS is a tool for supporting fathers and other men caring for children and youth living with HIV/AIDS. The document includes tips and tools for effective programs, addresses benefits of male involvement, the effects of stereotypes on health care provision, isolating factors, and barriers to involvement. This and other technical assistance tools are available on the HRSA Web site at http://hab.hrsa.gov/tools.htm.

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